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Truth and fear

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Two things that have been on my mind lately…

Truth.

A large part of the reason I haven’t been consistently blogging for awhile is because I am clinically stable. I have been for awhile. Everyone, please knock on wood.

Because of that, I feel like I don’t have as much to offer right now. That my stable experiences are somehow not relevant to the conversation.

If you feel that way about hearing from patients who are stable, I’m not upset about it. I understand. When you are reading and trying to find bloggers you can relate to when you’re in the midst of a flare, my current health status doesn’t add to that dialogue. Jump back to posts from 2010, there is a lot of health drama in that timeframe.

I share this as a way of explaining a big part of why I’ve been absent for awhile. I honestly don’t know what to think of feeling like I don’t have much to offer right now. Part of me says that’s bullshit, another part of says it’s ok to sit back and marinate on that for awhile.

What I can offer is thoughts on what it’s like to be stable.

Grateful. Happy. More carefree.

But also.

FEAR.

Like scared shitless sometimes. Realizing you’re that idiot who walks a wire across the Grand Canyon with no safety apparatus. Knowing that you won’t see the gust of wind coming until you are plummeting.

I have been on my current medicine regimen for 3.5 years. Diclofenac and xeljanz. That is the longest I’ve ever been successful on anything.

Humira was great. Until it wasn’t. Roughly 2 years.

Enbrel didn’t do a damn thing.

Orencia was great 2.5-3 years. Until it wasn’t.

And when it wasn’t, it was like being hit by a freight train out of nowhere. And it is devastating.

I realize that I’m lucky, that even if xeljanz fails me, I haven’t failed that many medications and I have options.

But I don’t want to have to go through that again.

So I carry on with life, enjoying feeling stable, but the fear is always present.

You never really feel normal again, even if you’re feeling better.

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2018 so far

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Whew. So I do a whole Happy 2018, I’ll be blogging most consistently post and then I disappear. Again. But I do have a good excuse!

I closed on this fixer upper in October.

I don’t know how it is where you guys live but the home buying process was kinda crazy. I made 6 offers on 6 different properties over several months. I made most of these offers within a day of the property being listed and wound up being outbid 6 times.

This is lucky number 7.

I had a few ‘must have’ items on my list to make living with RA easier. I wanted a ranch style, one level house. I wanted a garage or a carport. I wanted a house that was structurally sound and was ok with paying for updates.

I got…most of those things.

I used a realtor who was recommended by multiple friends and when we first met, I found out she had RA too! We even go to the same practice! That wasn’t a must have but she absolutely, 150% was invaluable at pointing at things that may affect my disease. IE I fell in love with a condo that had a fully finished basement with bedrooms on the second floor and she was quick to ask ‘you want to be responsible for lugging a vacuum around 3 levels?’ Of course not. She didn’t hold me back but she had a unique understanding of my health and no fear of reminding me what was/was not a good idea.

It is a fixer upper so I’ve been spending a lot of time doing just that. Some things I hired out, other things I’ve done on my own. The challenge is that I continually have to remind myself that I don’t need to do everything at once. That is especially important to my budget and to things I’m doing myself from a health perspective.

Exhibit A: this was my project last weekend. I dug up all the monkey grass on one side because I have an irrational, overwhelming hate for monkey grass. I planted shrubs and mulched. I was so pleased with the result and wanted to do the other side…but I had to remind myself that I was already going to be sore, my hands were already swelling some, and that waiting a week or two is also ok.

Before (I forgot to get a pic of the grass I dug up but you can see it in the first pic

After:

What I want to dig up next:

I also had the kitchen cabinets painted white:

The hardwoods refinished:

And much more.

So that’s where I’ve been! I’ve definitely been more active lately because of it and definitely been more flarey because of the activity. This gal is not accustomed to manual labor.

But even with the flaring and fatigue, or actually because of it, every little project I complete feels like an accomplishment.

And I definitely need these little wins. But going forward, I will try much harder to share them more consistently.

Happy 2018!

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I know, September and then nothing!  Bad blogger.  To be fair, I did have a post set to auto publish in October and somehow it didn’t…so you will probably see that in the next few days.  

I hope everyone enjoyed a wonderful fall, Thanksgiving, Christmas, Hanukkah, Kwanza, Festivus, or whatever it is you may celebrate.  Except for our President to whom I’d like to say Happy Holidays.

Moving on…

2017 was a great year but also a hard year.  My health has been stable but not stellar, something that it truly only my fault at this point by eating like a sloth and exercising like a car on cinderblocks.  My finances look good but could look better.  My work is stable but I’d like to be a rockstar. My personal life is fine but I’m feeling very stuck by certain things that used to help me move forward.  

I have never been one to make resolutions but this year I’m making monthly commitments.  For me, it is simply easier to commit to a month of something because if I fail, I get to start fresh in a few weeks after figuring out how I can be more successful vs making it a few weeks and then feeling guilty for the rest of the year.

So my January commitments are:

1. Push the stable to stellar.  Eat clean and do something, anything good for your body from an activity level daily.  

2. See how little money you can spend in a day.  Starbucks…it’s not you, it’s me.

3. Blow work out of the park this month because January sets the tone for the year! 

4. Once a week, go somewhere new by yourself.  Talk to new people, grab a cup of coffee and observe…learn that it’s ok to hang out by yourself from time to time.

What do you do for the new year?  Goals? Resolutions? Mantras?

Ramblings on September

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Another gap in writing but I’ve been busy working and traveling and ‘aunting’ to this sweet peanut. A very cute and cuddly excuse for being absent, indeed!

This post is part of the second link-up party hosted by A Chronic Voice. Check out how to participate here!

 Just a little stream of consciousness from me as I’m sitting on a train, trying not to fall asleep, on what I’m focused on resisting, learning, struggling, supporting and changing.

Resisting: it’s my birthday in 10 days and for some reason, my birthday always gets me down. I think, for me, a birthday is a yearly reset, an assessment of what I intended to do for the 365 days that I was the age I am and unfortunately, I always dwell on what I didn’t get done vs all I did. I’ve gotten particularly tough on myself since having RA because for some stupid reason, I feel the need to be everything to all people.  A standard that would be unattainable even with no chronic illness.  So I will be RESISTING the urge to do this and instead focus on simply being present: enjoying the phone calls and texts I get from people who care about me and enjoying a nice dinner with dear friends.

Learning: I’ve had a bike for a little over a year now and I’ve ridden it less than 5 times. Most recently, my excuse is that it’s been hot. But for serious, the real reason is because relearning how to ride a bike is surprisingly *not* like riding a bike like everyone says. Especially with RA and the fears of getting hurt layered on. So I will be working on learning on how to really ride a bike with RA.

Struggling: Exercise and nutrition. Y’all. I’m lazy and eat like crap right now. True story: I’ve been working out twice a week with a trainer since June…and gained 5 pounds. Who does that? This girl. How? Because I get hooooongry. And I’ve never met a pizza I don’t like. So I am going to struggle with making better nutrition choices and struggle to push myself to be more active.   I have better disease control and sleep when I’m better with these two things.

Supporting: I’ve been doing some research online about Harvey and recovery efforts. I’d like to find a way to support chronically awesome folks who have been affected by Harvey.  I imagine that chronically ill patients have some very specific needs outside of what may be provided.  Any suggestions?

Changing: Hmmm, I’m constantly changing. But the change I’m most excited about now is that we are ‘changing’ to FOOTBALL season. Go Panthers! Keep pounding!

Bedroom tour

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So recently, I shared this photo on my blog Facebook page:


I thought it was another case of me being quirky…which let’s admit, I am very quirky…but a lot of other people commented that they too had to sleep with water and that they also didn’t think they did this before RA.  It was funny and cool, I never cease to be amazed at the things I am taught by other patients.  

It made me wonder what else I may do that we don’t necessarily realize we have in common so I thought I’d show you a few more habits of mine that are perhaps a bit quirky but perhaps may be surprisingly familiar?

So welcome to my bedroom, the place where no magic happens. (Sorry, I grew up watching MTV Cribs and couldn’t resist. But I kept it PG, right?) But I’m starting with this room because this is where the most important thing for my overall health happens: sleep!!!

Right before I took these pictures, I caught myself going to make my bed and straighten up a bit.  I stopped because that’s not ‘real.’  If you were to come to my house as a guest, it would be clean and tidy, bed made, shoes put up.  I do vacuum and dust weekly. But especially when I’m tired or not feeling good, this is what it looks like.  Sorry Mom, but let’s keep it real here.


So, here is my bed.  It’s not on the bed right now because it’s hot today but it’s not unusual for me to have a down alternative duvet on top of all of this.  I can’t sleep if I’m cold.  I get cold very easily and it makes me achey.  I also like the weight of all the blankets, especially if I’m flaring.  I feel like it keeps me from moving around much when I’m sleeping and when you flare, nothing sucks as much as rolling on to a painful joint and waking up.

I also have a very particular pillow formation.  Let’s call it the T.  Sometimes I also put either a pillow or a foam roller under my knees.  I like my pillows like this because it’s a good neutral back and shoulder posture but also because I don’t move around much in this position.  

Yes, the theme here is that I don’t like moving around much when I sleep.  I go through phases when I have a very hard time falling asleep so it’s important to me that I stay asleep once I’m out.

I also have a humidifier that I run pretty much year round.  I get super dry and it’s incredibly uncomfortable.  I don’t know if it’s a function of RA though as I do remember feeing that way even when I was a child. 


Here is my bedside table.  Yes, the drawer always stays open like that.  Mainly because I have so much crap in there that half the time I can’t close it.  Yes, I will admit that there’s nothing in the other three drawers.  I just realized that.  And no, I honestly don’t know why I don’t use them.  

Even worse is the fact that even with the full drawer I can’t shut, the only things I use in that drawer are my glasses and the remote.  I’m just now realizing I have a Bible in there…hotel chic I guess? 😂😂😂

Anyways, the water bottle is ever present and full.  I prefer it with lots and lots of ice cubes as well as a little bit of lemon juice.  I use the BioFreeze on anything that may be acting up before bed, I really like the combo of that with a heating pad.  I also use peppermint oil under my nose and Vicks on the bottom of my feet.  My sinuses can be awful and perhaps it’s placebo effect but the Vicks on the bottom of my feet at bedtime works miracles.  The fuzzy socks are to save my sheets…and because cold feet aren’t fun.


This is my closet.  This section on the left is my as needed supply area. I just named it that though, it’s the best place to stash the things I sometimes use.  Heating pad is awesome, I actually have several, and I have ice packs in my freezer.  I love those things, switching back and forth between the two really helps when I hurt and the heat alone is good when I can’t sleep.

The foam roller I use sometimes to stretch sore muscles but more commonly use under my knees to take pressure off my lower back and hips when I sleep.  The tennis ball is great for almost trigger point like massages of sore, knotted muscles.  

I do a lot of restorative yoga and I adore my yoga wheel.  I pull that out simply to stretch but it’s also good to change things up if I can’t fall asleep.  Sometimes just getting up, doing some stretching and trying again is all I need.

That back massager…I would seriously pay someone to stand in my room all night and use it on my back.  It is amazing.  

The eye mask brings me to the last thing I need to sleep: pitch black.  If I could build my dream bedroom, it would be a cave.  I have thick curtains over my blinds but sometimes I still need help via the mask.  Sure, I usually wake up with it wrapped around my head but I’m really light sensitive when I can’t fall asleep.

So that is the grand tour!  Do you see anything familiar or have similar things you need?

When to pull the RA card

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I rarely if ever use the fact that I have RA to get out of something and take issue when I hear about others doing it.  In fact, I hate it when people assume I need help with something unless I have very specifically asked.

For the record, I can: use a ladder, carry dishes, haul my groceries in, open doors etc.  But all of these are items that people have tried to force assistance on me many, many times.

I do understand but it’s also frustrating because I feel like most of us are acutely aware of our capabilities and limitations and dammit, don’t limit me if I don’t tell you I’m limited, right?

However, and I don’t know if it’s an RA thing or if it’s more of a ‘I’m not going to do this thing’ because to be fair, my plan for the following would be the same with no RA.

What plan?  Oh, just that tomorrow I found out the building I work in is having its yearly fire drill.  So at 9am, the alarms will sound and all floors must evacuate via the stairs.  Then we get to stand outside in the heat and get cleared back in floor by floor, also via the stairs.

I work on the 8th floor.

So I will be working from home until lunch tomorrow.  Because mama has RA and absolutely no time for that nonsense! 😂

Today…

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I woke up at 4:30am to catch a flight to NYC for a work meeting and lunch.  I was super proud of myself because I made it to the airport by 6:15, carrying only a big bag with my laptop, notebook and wallet.  This was nice because when I usually travel, dealing with multiple bags, some of which are quite heavy, can really screw with my shoulders and hips for a few days after.

Today was easy.  Well…minus the fact that I got stuck in the security line in the middle of a group of Mormons returning from their mission.  (No offense, Mormons). This one particular guy was determined to help me load my possessions on to the security line and I swear to God, I thought he was going to take my shoes off for me.  He had no way of knowing that I have RA and that I am super sensitive when I perceive people are trying to help me of things I am perfectly capable of doing…but all I could think was DUDE!  Too much talking too cheerfully too close to me at the crack of down and I know you can’t drink coffee but please back off until I get mine!!!!  I feel bad even writing that…I know he was just trying to be cheerful and helpful but I have never been accused of being a morning person.

The meeting and lunch went great…well, the substance did.  I’ve been recovering from a summer cold and I kinda hit the wall of tired around 1:30pm and started coughing again.  When we got back to LGA at 2:45, I had the cough and now a headache.  But my friend who used to be a flight attendant told me that congestion after flying isn’t abnormal.  So fingers crossed.

It was interesting to compare the differences/similarities in how I felt with a small bag vs big heavy ones.  I noticed that the more tired I got, the more I changed my walking posture.  I started to have some hip pain…but now I’m not sure if that is due to RA or due to grossly unsupportive footwear.  I know that when I have big bags, it’s much worse.  But I’m curious now if the pain is due to a small flare or more due to just being tired?  Who knows…I went to NY earlier this year with coworkers a week after a tetanus shot that sent me into a super flare.  I’m happy that I was only a little sore and NOT having people worry about how bad I was walking!

My flight wasn’t supposed to leave until 5:05 and for once in my life, I was able to rebook on a much earlier flight. We wound up delayed an hour but I still got home much earlier than I would’ve.

And now…now I sleep the good sleep that comes when you are bone tired.  I’m really curious how I feel tomorrow…